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Dyspareunia uncovered : a mixed method exploration of the neglected symptom of endometriosis Wahl, Kate Judith

Abstract

Dyspareunia affects approximately 50% of people with endometriosis. Despite the prevalence of this symptom, it has been neglected in scientific contexts. Advancing the treatment of endometriosis-associated dyspareunia requires that it is adequately understood and measured in clinical research. This work therefore aims to provide a systematic description of dyspareunia, explore novel approaches to measurement, and makes recommendations for the development of an appropriate patient reported outcome measure. I conducted two studies exploring endometriosis-associated dyspareunia, the first of which was a qualitative description of sexual pain. 17 people with clinically-suspected or diagnosed endometriosis completed interviews about their experience of dyspareunia. Participants primarily experienced pain at the vaginal opening (n=7) and pain in the abdomen/pelvis (n=13). Pain at the vaginal opening began with initial penetration whereas deep pain was often triggered by full penetration or certain sexual positions. In general, participants describe superficial dyspareunia as pulling, burning or stinging and deep dyspareunia as sharp, stabbing, or cramping. Dyspareunia caused most participants to avoid or interrupt intercourse and many reported that the pain negatively affected their self-esteem, partner well-being, and/or relationships. The second study was a cross-sectional study that examined the relationship of superficial and deep dyspareunia with infertility concerns among 300 reproductive-aged participants with histologically-confirmed endometriosis. The odds of infertility concerns were not higher among women with more severe deep dyspareunia (OR=1.02, 95% CI: 0.95-1.09, P=.58). However, the odds of infertility concerns were higher among women with more severe superficial dyspareunia (OR=1.09, 95% CI: 1.02-1.16, P=.01); this relationship persisted after adjusting for potential confounders (AOR=1.14, 95% CI: 1.06-1.24, P<.001). Additional analyses indicated that deep dyspareunia and superficial dyspareunia were different constructs. Overall, the results indicated that measures of endometriosis-associated sexual pain should separately quantify both superficial and deep dyspareunia. Visual aids for item stems, appropriate numeric response scales, and the inclusion of items about dyspareunia impact could improve measurement and management of this symptom.

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